Friday, September 27, 2013

Walking the Tightrope

I heard
Aaron on the monitor early this morning, a little after 5:00. I rolled over in bed so that I could hear
better. No, it wasn't a seizure. I listened for a couple more minutes and then
knew that Aaron was awake. Not only
awake, but it sounded like he was out of bed.
Soon Gary got out of bed and went downstairs. Aaron popped out of his room when he heard
the footsteps and said, "Mom?"
But he knew it wasn't Mom when he heard Gary's voice, so he went back to
his room while I listened again on the monitor.
Soon I got up, too, and went down to fill my coffee thermos. I headed back upstairs and was in Andrea's
room, where my quite time desk is, and was quietly closing the door when once
again Aaron quickly opened his bedroom door.

I was
discovered! He clomped up the hall and
began to tell me about his head and stomach hurting. His blood shot eyes also told a tale. Aaron has started a new medicine this week,
and every morning he has gotten up early........much earlier than usual, but
this morning was way too early. Is it
the medicine that is causing his sleep to be disrupted? Does he really feel sick? With Aaron it's hard to tell because he tends
to exaggerate aches and pains in order to either get sympathy or to be able to
stay home from his day group.

I ushered
him back to his room while listening to him talk about not feeling well, and
then he launched into a rundown of the latest movie that he's watching. I told him to hush about the movie, helped
him take his sweater off, pulled back and straightened his covers, and finally
talked him into getting in bed again over his protests that he wasn't
sleepy. He kept talking. "Aaron, Aaron," I said. "Just close your eyes and relax. Don't talk anymore about movies or about your
head or stomach. I bet you'll go back to
sleep." He wasn't sold on that
idea, but I could tell that he liked the feel of his multiple blankets on top
of his tired body and that he was indeed relaxing. I turned off his light and closed his door.

It wasn't
long before I could hear his steady breathing through the monitor. Good!
He had fallen back asleep.
Hopefully he would stay in bed for a couple more hours, at least. It was just a little over an hour later, as
Gary was getting ready to leave for work, that I heard Aaron stirring and soon
he was downstairs. I waited in the
kitchen to see what look was on his face.......what mood he was
showing.........when he came into the room with a smile. Ah, relief!
He talked about not being able to sleep, about his head and stomach, and
his movie once again........but he was happy and I was hoping the pleasant mood
would last.

"Mom! I woke up at 5:09! Why couldn't I sleep?" We talked about Aaron's sleeplessness even as
I reminded him that he did get an extra nap after he went back to bed. I wanted him to feel rested and not to claim
extreme tiredness as a reason to stay home today. Soon I had talked him into eating some
breakfast.

I suggested boiled eggs and
bacon, but he only wanted eggs. He
finally agreed to the bacon if I would make it crispy and not chewy. Later he had his eggs and bacon along with
his coffee as he was snuggled under his blanket watching a program on the
DVR. What a life! Of course, the program he was watching was
one that he started yesterday but he didn't get to finish it. Therefore, in true Aaron fashion, he started
the recording over from the beginning.
He will NOT usually resume watching a program where he left off but will
instead start all over from the beginning.
Some programs take several times to watch because of this regimented way
of doing things. He also presses the
pause button every time he looks down at his plate to put food on his spoon or
fork. He cannot miss one second of his
program.........not one. So it's
pause......scoop food........look up.......press play........chew and
swallow......press pause.......scoop food..........

I mentioned
this to Aaron this morning in a very matter-of-fact way so that he wouldn't get
defensive. He confirmed that this is how
he operates. I just agreed with him and
walked back in the kitchen as I left him to his pausing and playing, over and
over and over. There he sat, with his food
and his multiple utensils and napkins and coffee...........with his particular
way of watching his program.........and his mother just smiling inwardly at
this unusual son.

I got our
supper in the crock pot and cleaned the kitchen while Aaron finished his
pausing and chewing and playing. He was
very quiet, and I saw that his head was laying back though his eyes were
open. He got a little grouchy when I
told him that I was going to shower, and that he should do likewise. Later, I looked up the hall and saw that his
door was closed. When I knocked and then
walked into his room, I saw him sitting at his desk and watching a movie on his
computer. Now his mood was
different. He was grouchy Aaron, and he
let me know that he wanted me to leave him alone. In fact, he took off his headphones and got
up from his chair as he pointed to the sign that he had put on his door.

He was quite
irritated that I had not seen the glaring sign...........the sign that told me
to not only stay out, but to get lost.
Oh boy.........here we go, I thought.
So I just told him that soon we would be leaving, and then I left his
room as he closed the door behind me. Surprisingly
enough, the rest of the morning was pretty calm. He allowed me in his room a few more
times.........he gladly let me help him with his belt.........he listened while
I explained that his tiredness was not my fault..........and he actually got
ready to leave for his group without a fight.

He talked on
the way to meet his ride about all the things that Aaron talks about, which is
anything and everything that crosses his mind in that 10 minutes. "Mom, I saw a boy walking a dog this
morning. That dog is full of fluffy
fir!" And off he went, only pausing
for a brief comment here and there from me. As we neared Quik Trip and the Paradigm van
waiting in the parking lot, Aaron said, "Mom, tell them that I got up at
5:09. Tell them about my stomach and my
head and that I'm tired." I said, "So
you want me to tell them that you got up a little after five?" Of course, Aaron replied with impatience,
"I got up at 5:09!!!!"

Aaron played
the part of being very tired as I conveyed to the driver that Aaron had gotten
up at 5:09 and didn't feel well, etc., etc.
He was satisfied then, got in the van, and off they went. Off I went, too, driving to Sam's and thinking
of our morning. I feel like I am walking
a tightrope nearly every day. Hearing
that Aaron was up so early........at 5:09!!..............was how I started my
tightrope walk today. One foot gingerly
in front of the other as I heard him stirring and then as I went downstairs,
hoping that he wouldn't hear me. Silly
me! Of course he heard me. I headed across my tightrope as he came out
of his bedroom and as I helped him get back in bed. I was steady on the rope as I heard Aaron
sleeping again, but I wobbled when he came downstairs an hour later.

I kept my
balance as I suggested breakfast and talked Aaron into eating something, and as
we talked about his unique way of watching his recorded programs. Things got tricky when I mentioned taking a
shower and getting ready. Then I really
felt like I was going to fall off the rope when Aaron pointed me to his sign
and abruptly shut his door again.
Wobble.........get my balance.........wobble...........get my
balance. Such is life with Aaron.

I couldn't
completely breathe a sigh of relief until I was driving away after conveying
his message to the driver, being sure I got the 5:09 part correct. This balancing act covers the complete
spectrum of Aaron's life.........from serious new medicine issues and behavior
problems and seizures.........to whether he wants to eat a somewhat healthy
breakfast or will refuse good food.........to being told to stay out of his
room. Always balancing our decisions
about Aaron and our direction with Aaron, wondering if we're going to fall off
that rope at any given time.

We balance
our reactions to Aaron as well, struggling to be patient and loving while
knowing at times that we need to be firm and strong. We balance our time spent with Aaron as
opposed to our time spent doing what we want to do......without guilt. We balance whether to listen to Aaron's same
stories or same issues over and over and over again, or whether to pull the
plug and tell Aaron that he just needs to quit telling us this same
thing....AGAIN! And as time goes on, we
will need to balance how to protect Aaron with how to release him.

I'm just
very thankful that we have God to steady us when we start going sideways. Thankful that we have good family and friends
who give us love and support and advice and laughter. And very, very thankful that even if we do
fall off the rope..........underneath are God's everlasting arms to catch us
and to gently lift us back onto the rope..........where we will once again put
one foot in front of the other and once again walk this tightrope of life with
Aaron.

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About Me

I am the mother of three adult children. Our oldest child, Aaron, has both Epilepsy and Asperger's Syndrome (high-functioning autism). Aaron is now 30 years old and still lives at home with my husband and me. Aaron is really very funny, when he's not being very aggravating, and I love to share the humor and the joy of living with an adult child with autism. Sometimes I share the frustrations and struggles, too. Interspersed throughout are devotional thoughts that come while I garden and just live my daily life. It's a journey!